| Affiliation with other organizations: |
Alzheimer’s Café Alzheimer’s Care Resource Center, Inc. – Lake Worth, FL Alzheimer’s Speaks Advocate Health Care Alzheimer’s Care Associates Alzheimer’s Foundation of America (AFA) Alzheimer’s Outreach Center of South GA Alzheimer’s Support Network Arbor Terrace Morris Plains Area Agency on Aging for North Florida, Inc. Call Alert Center Eargasm Earplugs English Rose Suites /b-home HomeCare Jiminy Wicket Keep in Mind, Inc. LeadingAge Georgia NorthShore Care Supply Oklahoma Methodist Manor SBC Gerontology Second Wind Dreams / Virtual Dementia Tour Senior Care Associates SimpleC Splaine Consulting Terra Nova Films The Eden Alternative The Global Council on Alzheimer’s Disease (GCAD) TraininginMotion Trinity Senior Living Communities Unforgettable WindowMirror |
| Publications: |
Dementia Care: The Quality Chasm” 2012 online “Living with Dementia: Changing the Status Quo” 2016 online Caring Conversations Toolkits 2017 |
| Purpose of the organization: |
We collaborate with companies and invite people with dementia to discuss their needs and challenges, blog, report on their advocacy, give personal testimony, and conduct workshops to promote their individual, expert perspectives, ultimately for improving the quality of their lives. We write and publish original articles, curate resources and post support materials on our web pages at no charge. We publish and regularly update these in our online Resources Center, in the categories of Blogs, Facebook Groups, Videos & Films, Research Centers, Websites, Information on a Cure, and General Publications. We hold summit meetings and conferences with all stakeholders, including people with dementia and their care partners, to help develop strategies for improving their lives, and for better informing the public of this growing population, so that society can better accommodate them and their needs. We also provide for sale (at minimal cost), with helpful information, inspiring stories, and guides to moderating discussions as well as conversing with loved ones on topics of concern, such as maintaining hope and addressing the overall well-being of people with dementia. |
| Activities relevant to the conference of States Parties to the convention on the Rights of Persons with Disabilities: |
June 2012: 1st Dementia Thought Leaders Summit to form consensus on: (1) the definition of person-centered dementia care; and (2) the conceptual and operational framework for person-centered dementia care June 2014 2nd Dementia Thought Leaders Summit to form consensus among diverse thought leaders and dementia care experts on what is needed to improve dementia care in the U.S. 2016-17 Caring Community Conversations - (Atlanta, GA; Tulsa, OK; Tallahassee, FL; Washington, DC) Conversations foster open, friendly facilitated conversations at a community level about living with dementia to change understanding of and attitudes about dementia. |
| Confirmation of the activities of the organization at the regional, national or international level: |
The work that we do to educate the public, care partners (the majority of whom are women) and individuals with dementia is intended to ensure they all understand that the life of the person in cognitive decline is still a life worth living to the fullest. We believe in the value of sharing knowledge and research not only from medical professionals, but from the many people currently living with Alzheimer’s, Lewy-Body Disease, Fronto-Temporal Dementia, Aphasia, Leukodystrophies, and other neurological conditions. We keep current with new organizations representing people with disabilities, so we can identify information and services that will benefit our community, since dementia is only recently starting to be accepted as a disability that warrants accommodations. We work with medical and non-medical experts, and our advisory councils (men and women with dementia) to understand and advocate for the most relevant, respectful, and humane care for people with dementia. We hope to continue helping those who are newly-diagnosed with younger-onset dementia and their care partners to move from feelings of devastation, loneliness, and helplessness, to a sense of confidence, community, and determination as they learn to navigate their lives based on a new and changing reality. |
| A list of members of the governing body of the organization, and their countries of nationality: |
Anthony Cirillo, FACHE, SECRETARY President, The Aging Experience [USA] Kim McRae, FCTA President, Have a Good Life [USA] Walter Coffey, VICE CHAIR President & CEO, LeadingAge GA [USA] Sandy Douglass Senior Living Consultant [USA] Robert Bowles Dementia Advocate LBD Living Beyond Diagnosis [USA] Chris Perna President & CEO The Eden Alternative [USA] Bill Keane Consultant in Aging, Keane i Inc. [USA] Jackie Pinkowitz, M.Ed., CHAIR Rutgers University School of Social Work Advisory Council [USA] Chris Laxton, CAE Executive Director, The Society for Post-Acute & Long-Term Care Medicine [USA] Lon Pinkowitz, MA. Senior Vice President, FuturAge [USA] Karen Love, Founder & Executive Director Dementia Action Alliance [USA] Teepa Snow, OTR/L, FAOTA President, Positive Approach to Care [USA] |
| Description of the membership of the organization, indicating the total number of members: |
The DAA has Partners instead of members. There are over 300 individual and organizational Partners, all from the United States. |
Quadrennial report due? Read more on our updated page.
Questions on applications, reports, or other inquiries
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